Alexander Devine CEO shares fundraiser hopes as 2025 Christmas appeal launches

The CEO of a children’s hospice in Maidenhead is hoping to top last year’s fundraising total through this year’s Christmas appeal.

This week, Alexander Devine Children’s Hospice Service launched its latest appeal to ‘help light up little lives this Christmas’.

The hospice in Snowball Hill provides specialist care and support for children with life-threatening and life-limiting conditions and their families.

This year’s appeal is being fronted by four-year-old Grace and her family.

Grace’s mum Georgina was 12 weeks pregnant when she and Grace’s dad Jamie

received the news they never expected to hear – that something was not right with Grace’s facial profile.

Following extensive genetic testing, doctors were still unable to provide a diagnosis.

The couple took the pregnancy week by week, not knowing what the outcome was going to be.

When Grace was born, she was diagnosed with the rare genetic disorder Treacher-Collins syndrome (TCS).

At four days old, she was fitted with a tracheostomy to open her windpipe and help her to breathe.

Doctors also found that Grace’s ears had not developed properly, leaving her with a hearing impairment, and she had a cleft palate which meant she needed to be fed through a tube in her nose.

The first few weeks in the hospital with Grace were ‘incredibly difficult’ for the family.

Grace was in Neonatal Intensive Care Unit (NICU) and, with COVID-19 restrictions in place, only her parents were able to visit.

The family travelled every day to Oxford to be with Grace, while also looking after siblings Kaitlyn and Zach.

Grace was in hospital for eight weeks.

Before being allowed to go home, the couple had to quickly learn how to fit Grace’s tube, attach the ties and change her dressings.

Wanting to make it home for Christmas, it was a race against time to find all the equipment Grace required to keep her airway clear and for her parents to finish their training.

Georgina said: “When we were told we could take Grace home for Christmas it was so surreal. Looking back now, I can see us scrambling left, right and centre to get everything together.”

For more than a year, the family cared for Grace on their own, until a community nurse referred them to Alexander Devine.

Grace requires 24/7 care to support her eating and breathing.

While being supported by the charity, the family has received community care, day care at the hospice, hydrotherapy, physiotherapy, overnight respite and sibling support.

“The hospice is like Grace’s home away from home. Even before arriving, her face lights up when we reach the gate and she knows she’s here for daycare,” Georgina added.

Care from the hospice also extends to support for Kaitlyn and Zach.

They attend sibling activity days at the hospice, receive sibling support and enjoy hydrotherapy pool splash sessions as a family.

On Monday evening, the hospice held a screening of its appeal video, telling Grace’s story and encouraging people to support and donate.

The event was attended by around 40 people, including Grace and her family and

previous Christmas appeal stars.

Speaking to the Advertiser, hospice co-founder and CEO Fiona Devine said that for this financial year, the hospice needs to raise £3.4million.

“For all charities, it’s a really difficult time, but I think in particular for children’s hospices, because it’s a huge amount we need to have to raise.

“We are asking through our Christmas Appeal for people to share it, to support it in any way that they can, anything large or small.”

The hospice currently supports more than 200 children and families locally, and 85 per cent of the funds needed to keep the hospice running come from fundraising, donations and gifts in wills.

Last year’s appeal raised around £15,000.

“If we can absolutely smash that, which we probably stand quite a good chance of, because the amazing Volvo, who have their HQ in Maidenhead, have very kindly offered to match fund up to £5,000 for our Christmas appeal, that gives us a really good start,” Fiona said.

Georgina added: “I would tell anyone considering donating to Alexander Devine that it doesn’t just support the individual children, it makes a difference to entire families, just like ours.

“I would urge people to think about supporting Alexander Devine Children’s Hospice Service.

“It means so much to so many families, who would be lost without this support.”